It’s amazing what people say or the actions they adopt to you when you have bad news.
Now, I was fully aware that people would not know what DMD was – I didn’t! What I wasn’t prepared for was quite the diverse reaction it would cause.
‘Maybe it’s fate that he got you as parents – so you can give him a good life’ Uum no! This is not fate, this is really really shit.
‘Everyone has a different path in life, this is now his’ Again, no. Why would you say this and wish this on anyone?
‘You wouldn’t know, he seems normal’ A usual one for mums at the school gate. Well he is still normal, he’s still our gorgeous happy boy, that will NOT change.
‘How are you?’ (With that sympathetic tilt of the head) Well, currently I’m trying not to cry, have been dealt the lowest blow ever and feel like shit. But say ‘fine thanks’.
‘I don’t know how you’re coping, I couldn’t’ Thank you, you normal person!
‘Oh I know someone who’s ill /got cancer / here’s my problems…’ Honestly at the moment I couldn’t give a ****. This pales in significance to me right now. For the record this does not make someone who’s had bad news feel any better, just a little irritated.
‘Ah bless him’ Please don’t. You wouldn’t say that to any other kid!
‘We’re always here for you, fancy a night out to chat or not chat?’ Yes, yes I do and thank you my fab friends!
<<hug>> When you see I’m not ok, I’ve had another blow, thank you.
‘We want to always be there for you and William no matter what.’ I cannot express how warm inside this makes me feel when friends say this, when this whole thing really makes you feel like a bit of an outsider with no ‘normal’ future ahead.